Thousands recruited for “new era” severe mental illness study

Thousands of people living with schizophrenia and severe depression are being recruited by the NHS for a major new study which could unlock a “new era” of personalised treatment for severe mental illness.

As part of the world’s largest mental health study, researchers will analyse the DNA of thousands of people alongside detailed questionnaires to discover what can increase the risk and severity of serious mental health conditions.

From this week, almost 50,000 eligible adults living with bipolar, schizophrenia, psychosis or major depression in England and Wales are being invited to join the study, known as GlobalMinds.

NHS England’s DigiTrials service will identify eligible patients and contact them to see if they would like to take part to help find new treatments.

Patients will be provided with at-home sampling kits as well as with targeted support from the NHS for those who are more severely ill or face barriers to using technology.

The study will combine genetic data from blood or saliva samples given by volunteers with online questionnaire responses and information from their NHS medical records – linking genes, background, biology and mental health.

The initiative will develop most detailed ever dataset on serious mental health condition to help transform understanding, improve diagnosis and unlock new, more personalised treatments.

The three-year study, led by mental health data science company Akrivia Health Ltd in partnership with Cardiff University, has been launched in England and Wales initially and later will expand internationally.

Dr Adrian James, NHS England’s National Medical Director for Mental Health and Neurodiversity, said: “This major new study could transform our understanding of severe mental illness and lead to the dawn of a new era of personalised treatments for patients with conditions including schizophrenia and severe depression.

“People living with a severe mental illness are affected by their condition every day – and it can often lead to preventable physical conditions and shorter lifespans.

“The new study gives us the opportunity to change the way we treat these conditions and we’re using the NHS’s DigiTrials service is to invite suitable people faster, fairly and at scale. I’d encourage anyone contacted to consider signing up to be part of this ground-breaking study.”

Ten NHS mental health trusts are already supporting the project and anyone over 18 from those areas who has been diagnosed with a severe mental health condition can join.

A total of 49,000 people with mental illnesses are being sought, with 2,000 already enrolled and NHS DigiTrials inviting further eligible patients. Another 1,000 people with dementia will also be included in the study.

GlobalMinds’ Chief Investigator, Professor James Walters from Cardiff University, said: “GlobalMinds provides an unprecedented opportunity to uncover and identify the many personal and biological factors behind mental health conditions, so researchers can help clinicians and patients by enabling earlier and more precise diagnosis, and making available optimum treatments for all patients.

“Precision medicine has already revolutionised the treatment of cancer and other rare diseases and we want GlobalMinds to bring the same breakthroughs to mental health. By creating the first large-scale dataset linking both genetic and detailed routine clinical information, GlobalMinds will unlock a new era of personalised mental health care, so we can help tackle the global mental health crisis.”

The charity Rethink Mental Illness is also supporting the study and will help raise awareness of the research among people severely affected by mental illness.

Brian Dow, Deputy Chief Executive of Rethink Mental Illness, said: “This study has real potential to deepen our understanding and open the door to a new generation of treatments for mental illness.

“The strength of the study lies in the partnership between researchers, the NHS and charities like ours, which means data can be powerfully fused with lived experience, with the voices of people experiencing mental illness remaining front and centre.

“We’re delighted to be supporting the study to reach as many people living with severe mental illness as possible.”

GlobalMinds has also been designed to ensure the experience of people taking part is prioritised, with a dedicated Patient Public Involvement and Engagement group.

Akeela Mohammed, a GlobalMinds’ Patient Public Involvement and Engagement Adviser and Founder of Healthy Her, a not-for-profit organisation that empowers South Asian women through wellbeing, sport, and community engagement, said:

“It is vital that research initiatives like GlobalMinds are created from beginning to end with the voices and needs of vulnerable and less included communities at their heart, so that the outcomes benefit as many people as possible.

“That’s why I’ve enjoyed providing both my personal experience of mental health and professional insights into the barriers diverse communities face in accessing research, to this groundbreaking study and I cannot wait to see how this people-powered research will transform lives.”

The study is supported by the National Institute for Health and Care Research (NIHR), with funding from the Wellcome Trust and Johnson & Johnson.

Anyone aged over 18, who is living with a diagnosed severe mental health condition and lives in participating areas, can sign up at: globalminds.org

For the GlobalMinds study, eligible patients are being invited to participate and no one’s data is shared with researchers without their knowledge and permission.

Further information

More information about Global Minds is available here: globalminds.org

GlobalMinds is open to anyone aged 18 or over with a diagnosis of Bipolar, Schizophrenia, Psychosis, Major Depression, or a related condition who live in an area with a participating NHS Trust. Participants sign up online via: globalminds.org and following a brief eligibility check, answer a digital questionnaire. They then are asked to provide either a blood or saliva sample. At-home testing kits or visits are available, and all participants will receive a voucher of up to £50 as a thank you for taking part. Participants can choose to withdraw at any point without giving a reason if they decide to later.

Participating NHS trusts so far are South West London and St George’s Mental Health NHS Trust; Rotherham Doncaster and South Humber NHS Foundation Trust; Leeds and York Partnership NHS Foundation Trust; Cardiff and Vale University Health Board; Hampshire and Isle of Wight Healthcare NHS Foundation Trust; Birmingham and Solihull Mental Health NHS foundation Trust; Tees, Esk and Wear Valleys NHS Foundation Trust; Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust; Sussex partnership NHS Foundation Trust; Avon and Wiltshire Mental Health Partnership NHS Trust.

Founded in 2019, Akrivia Health is a spin-out from the University of Oxford and the NHS, built on the Clinical Record Interactive Search (CRIS) system. Akrivia works in partnership with 20 NHS secondary care mental healthcare organisations so far across England and Wales, to curate the electronic medical records of >6.3 million patients served by those hospitals. The data curation service Akrivia provides free of charge to these NHS organisations turns unstructured clinical information, inaccessible for research use by those NHS hospitals, into structured and clinically-informative data points to enable better evaluation of treatment pathways and novel research into mental health conditions. Akrivia do their work with the help of practicing clinical academics across the country, and with an engaged network of individuals with lived experience of mental health. Akrivia also delivers novel and exploratory research services utilising the clinical record data to accelerate insights.

The UK-led GlobalMinds research programme also includes a cohort of 1,000 dementia patients who are being directly recruited through several routes including the NHS hospitals collaborating with GlobalMinds, care homes, or through a partnership with Cera Care – a digital-first home healthcare company –  piloting in three English locations over the next few months, with further support from the relevant NIHR Research Delivery Networks. More information is available at dementia.globalminds.org

Kaizen Bioservices provide sampling logistics for the GlobalMinds study. Global Initiative Ltd provide the website and clinical trial management platform, Trial Deck. Claremont Communications partnered with GlobalMinds to design the study website and patient facing materials.

For filming opportunities and interviews with representatives of GlobalMinds, contact Tanisha Kamat at tanisha.kamat@akriviahealth.com or 07407687936. Case studies of GlobalMinds participants/those with lived experience of mental health conditions are also available on request.